Remembering Ryan

I got some good gossip the other day, and I got that excited feeling in the pit of my stomach and all I could thing of was…Oh man wait till Ryan hears this! Then it hit me, and the excited feeling in the pit of my stomach turned to lead. And I realized that this is what it’s like to lose your best friend. That is what Ryan was to me. Aside from being my boyfriend, he was the person I could talk to about anything and everything. We could read each other’s thoughts and sometimes finish each other’s sentences. We knew just what buttons to push on each other and yes; we could irritate each other like no one else could.

And man, could he make me laugh. There are really no words to describe the essence of Ryan, and what made him who he was. He was a combination of determination, wit, graciousness, courage, and creativity. He had the ability to touch every person he came into contact with.

His service reminded me of the movie “Mr. Holland’s Opus”. If you have never seen the movie, it follows a music teacher’s career over a span of 30 years. At the end he is forced into retirement and the school has a special ceremony for him. Hundreds of people showed up. Former students, friends, colleagues. As one speaker told him: Look around you. There is not a life in this room that you have not touched! I think Ryan would have been amazed at just how many people he affected.

I only knew Ryan for three years. I first met him just as his health began to decline. He could still walk when I met him. To define just how progressive and degenerative E.B can be, one need only to look at the picture collage in Ryan’s bedroom. Pictures of a chubby baby (chubby!) and a healthy looking 10 year old are mixed in with photographs of a frail looking soul sitting in his easy chair, covered in bandages from neck to toe. In many of the pictures the one feature that always stands out to me is his eyes. Ryan had beautiful, huge blue eyes that one could get lost in. The saying “The eyes are the windows to the soul” certainly rang true for him.

Photo: Ryan’s Formal pic ->

The first time I met him in person was back in 1997, on April Fools Day. He insisted that I play a joke on someone. “But I don’t know anyone here… who would I play a joke on?” We brainstormed and 30 minutes later I found myself phoning my mother back in Massachusetts to tell her that Ryan and I were getting married. We laughed like crazy as my mom stammered and stuttered threats over the phone before I told her it was a joke.

Aside from his family and friends, music was his great love. He loved to compose music, and when his hands no longer allowed him to play the piano, he became a collector of music. He owned over 500 CDs.

Ryan took piano lessons when he was young, but he never learned to read music very well. He had an ear for it and would play from memory. As he got older, his hands began to contract. As the fingers fused to the palm one by one, he compensated by playing with his knuckles. His piano teacher said that after Ryan’s lessons, the keys would always a little bloody. He would purposely schedule kids that he felt were becoming lazy about practicing right after Ryan, and he would wait until the next kid sat down to wipe the blood off the keys.

<- Photo: Ryan’s 8th Grade pic

Ryan taught so many people so many things. If nothing else, he taught me not to take the little things for granted. I find myself thanking God for things such as being able to walk up a flight of stairs or driving myself to the store. I also thank God everyday that I met Ryan. Of course I wish that we could have had more time together, but I feel blessed for the short time we did have. There was not a day that went by that Ryan didn’t tell me that he loved me, and he was so grateful for anything anybody did for him; be it giving him a gift or pouring him a glass of milk. Even though he was unable to do many things, especially these last two years, he loved life. He was able to find joy in simple things; things that most people including myself would probably not think twice about.

Last Halloween, as sick as he felt, he managed to do himself up from his collection of Halloween make-up kits, even though he knew his mom, dad and I would be the only ones there to admire his work. After laboring for 45 minutes the result was a realistic looking bullet hole in the center of his forehead, with fake blood dripping all over bandages that had just been changed hours before. Mom wasn’t too happy about that!

Just going to the mall with Ryan was a learning experience. Planning ahead of time, taking everything at a much slower pace. Learning to deal with rude stares and ignorant comments that people don’t think you can hear- and worse; the ones they know you CAN hear. Learning how to be aware of what is handicapped accessible and what is not. Learning how to maneuver his fart-cart through the narrow isles of K-B Toys was an experience in itself. Learning how to handle sales clerks who think that just because Ryan is physically handicapped, it must mean that he is mentally handicapped as well.

Photo: Ryan and Jen – Xmas 98 ->

On Veterans’ Day, Ryan’s feeding tube slipped out because the skin around it had broken down so much. He underwent surgery at Stanford Hospital to close the hole that his G tube had left and insert a J tube. The surgery went well, but things started to go downhill from there. He had a reaction to the nutritional supplement that they were feeding him through his J tube, which made him sick to his stomach. They flew him back here to Redding right before Thanksgiving, and he began having trouble breathing. Blisters had formed in his airway from being incubated during surgery. On November 27th, he stopped breathing and was resussitated and put on a ventilator. Since he was 22 and of legal age to decide for himself, he told us he wanted the tubes out. We made sure that he knew the consequences of his decision, and he still insisted that he wanted them out. 10 minutes later he stopped breathing; this time for good. He died just after midnight on November 28th.

It has been a little over a month now, and we are all trying to adjust to life without him. His room will remain the way it is. The only thing that was removed was his bed, and in its place stands a table with his picture on it, and two chairs. One of his easy chairs is still there, so that one may go in and watch his movies, listen to his favorite music, or play a video game, and just remember Ryan.

Ryan Grant McClennen was born March 3, 1977 and died November 28, 1999 at 22 years of age. He had the Recessive Dystrophic form of EB and died from many complications from the disorder, including blisters in the airway and infections. His parents and his girlfriend Jen miss him terribly.

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About Me

My name is Silvia and while I was born and grew up in Italy, I now live in Southern California (USA). I am Mom to 3 boys, 1 in heaven, 2 on earth. My first son Alex (whose demise is most likely EB related) was stillborn at full term. After a miscarriage, I had my second son Nicky, who has the Recessive Dystrophic form of Epidermolysis Bullosa. My youngest son, Connor, is 100% healthy, and I never, ever take it for granted.
I started this website when Nicky was just an infant because I could not find any information about EB, so anything I came across I posted for the benefit of other parents and it grew from there. I still run this website (and its FB page) because I never stopped looking for information!
For more about me, you may visit my personal blog. Thank You for visiting!

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